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MDS Myelodysplastic syndromes

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  #1  
Old Mon Mar 4, 2013, 01:47 PM
Momhope Momhope is offline
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Join Date: Sep 2012
Location: Hollywood,florida
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Don't Know What To Do With My Mom Mds

I need help, I don’t know what to do, with my Mom case.
She qualify for a transplant with 40% survival rate. She is 67years old.
Her numbers today are:
Plt 77
WBC 2.10
Blood Hgb 10.0
RBC 2.5

Last BMT show 17% blast

Her Dr. don’t have here on treatment because of her numbers been stable also her Dr. (conservative Dr) will like to wait for transplant a little more but told me that this is the time for transplant if we want to take the risk.
In the other hand, the transplant Dr wants to do it now since she is in good condition now, the transplant Dr. stated if her disease convert to AML is no transplant since she will need to get treatment and that will be too much of chemo in here body to do transplant.

I don’t know what to do , My mom is my everything and just to think that I will lose her is killing me.
She has 3 10-10 match (her sister).

Please help me, what should I do?
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  #2  
Old Mon Mar 4, 2013, 03:43 PM
gina66 gina66 is offline
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Join Date: Oct 2012
Location: Roland, OK
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MDS

Hello. I hope for the best. The best support you can show your mom is positive outlook. I am a sick mom myself but I always tell my daughter to be hopeful and strong because it makes me feel better. Blessing to you and your family.
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PRCA, infected by Parvovirus. Took Prednisone 20-60 mg/day for 6 mos., Cyclosporine 100- 200mg/day for 6 mos., Exjade 1000-2500 mg/day current, Warfarin 3-4mg/day, Cyclophosfomide 50 mg/day for 4.5mos., Campath for 2.5 mos, Danazol 200-400 mg/day for 6 mos. Currently- Rituximab for 4 wks.
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  #3  
Old Mon Mar 4, 2013, 05:24 PM
bebop bebop is offline
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Location: Maysville Ga
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with blast being that high I would say now is the time to do it too.
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Old Mon Mar 4, 2013, 05:32 PM
Al's Wife Al's Wife is offline
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If you know someone or if you can do it, try to pull up Robin Roberts' interview on 20/20 in February. It is in segments and reviews her whole journey from MDS diagnosis through transplant. And even though she is younger than your Mom, it will give you an idea of some of the problems that need to be considered. Good luck in your and her decision, whatever it is.
Whether it is MDS or AML, it is truly a rollercoaster ride. Hang on and cherish each and every day.
God bless,
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #5  
Old Tue Mar 5, 2013, 02:52 PM
Mary4Mike Mary4Mike is offline
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My husband had a transplant at 64 years old. His donor was his sister - a perfect 10/10 match. He had low dose (ablative) pretransplant treatment and no radiation. He flew through the transplant....much easier than when he did Dacogen. He was totally transfusion dependent - 2 to 3 a week - prior to transplant. He was healthy otherwise, but said he couldn't go on sitting in a chair, exhausted and out of breath. He went for it and has never looked back. They have to tell you all the possible outcomes because .....they are all possible! It is a decision that a person has to make for themselves after weighing out all the info.

All the best to your mother and you. I just wrote to let you know our experience.....a successful transplant at 64 years of age. The fact that she has a perfect related donor is a BIG advantage!
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #6  
Old Wed Mar 6, 2013, 05:25 PM
Momhope Momhope is offline
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Location: Hollywood,florida
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Mom Mds

thank you all and thanks Mary to share with me your story ..
I will tell my mom about your husband, she is so afraid to make a decision because she feels very good.
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